Mandela Grief Challenges South Africa AIDS Stigma

Fri Jan 7, 2005 05:56 AM ET

By Andrew Quinn

JOHANNESBURG (Reuters) - When Nelson Mandela speaks, South Africa usually listens. But his message on AIDS still has trouble getting through.

Mandela's announcement that his son died from HIV/AIDS made headlines across the country on Friday as the grieving former president urged people to speak openly about a disease infecting some 5 million South Africans.

But in the newspapers' obituary pages -- packed with death notices for people in their 30s and 40s -- AIDS is never mentioned. South Africa, fighting one of the worst public health disasters in history, remains deep in denial.

"There are lots of people dying of AIDS and stigma still means in most instances people are still too afraid or too ashamed to state the actual cause of death," said Mark Heywood of the Treatment Action Campaign (TAC), South Africa's leading AIDS pressure group.

Mandela's son Makgatho, who died on Thursday at the age of 54, becomes one of a handful of prominent South Africans whose deaths have been publicly attributed to HIV/AIDS -- a disease which activists say kills more than 600 people in the country every day.

Last year playwright Gibson Kente, one of South Africa's top dramatic voices, died after publicly acknowledging his AIDS infection.

A prominent radio disc jockey also publicised his battle against AIDS before succumbing last year, while opposition leader Mangosuthu Buthelezi became the first South African political figurehead to acknowledge the personal cost of AIDS when he said he had lost two children to the disease.

OSTRACISED AND ATTACKED

But the fear surrounding AIDS is so deep that public revelation of HIV infection often leaves sufferers socially ostracised, and sometimes subject to violent attack.

One of the first South Africans to publicly say she had AIDS, Gugu Dlamini, was stoned to death by her neighbors in 1998 while in 2003 a victim of gang-rape was murdered after she informed her attackers she was infected with the disease.

Thanduxolo Doro, a spokesman for the National Association of People with AIDS (NAPWA), said social stigma was strong in rural areas where the bulk of South Africa's HIV infections occur.

"People live in small communities, and the fear of attack, or even of just being mocked by their neighbors, can keep them quiet," he said. "AIDS has been associated with bad behavior, with sleeping around. Nobody wants to be associated with that."

Activists blame the government of President Thabo Mbeki, which has long been accused of moving too slowly against South Africa's AIDS epidemic and only recently began offering life-prolonging anti-retroviral drugs in the public sector.

Mbeki, who once questioned the links between HIV and AIDS, was quoted by the Washington Post in 2003 as saying he personally knew no one who had died of AIDS -- drawing howls of outrage from AIDS groups who said he was promoting a sense of shame around the disease.

The government later said Mbeki's statement had been misinterpreted and that he was referring only to family members and close associates.

Mandela -- regarded with near religious devotion by many South Africans -- challenged the stigma on Thursday when he said the disease which killed his son was not "an illness reserved for people who are going to go to hell and not to heaven."

Commentators said on Friday they hoped South Africans would take their cue from the anti-apartheid icon and begin talking about the epidemic devastating the country.

"Let us show our love for Mandela by confronting the stigma surrounding HIV/AIDS," columnist Jovial Rantao said in Johannesburg's Star newspaper. "And let us show our love for ourselves by killing the stigma."

Powell, in Kenya, Meets Youths Who Fight HIV/AIDS

Sat Jan 8, 2005 06:51 AM ET

By Arshad Mohammed

NAIROBI (Reuters) - Secretary of State Colin Powell heard a 11-year-old speak of valuing her virginity and an HIV-positive woman advise abstinence Saturday as he met Kenyan youths who teach their peers how to avoid HIV/AIDS.

On what may be his last trip as secretary of state, Powell returned to a theme he has visited throughout his four years in office -- the need to educate young people to stem a disease that destroys families, societies and economies.

"Africa, I think, for too long ... ignored the problem, looked the other way and said 'no this isn't happening,"' he said when asked about Africa's high rates of infection.

"And there were cultural and tribal issues associated with this where, you know, promiscuity (was) accepted if not also encouraged and those sorts of patterns of behavior have to change in order to protect the African young people," he said.

On a two-day visit to Kenya to witness the signing of a peace deal for southern Sudan Sunday, Powell took time to sit down with 19 youths -- some as young as 11 years old -- who are learning and teaching others how to fight the disease.

"We learn about HIV and AIDS ... We are also taught how to value our virginity, our education and our life," said Grace Gathoni, 11, a Girl Guide (Scout) Brownie with a brown beret on her head and a yellow kerchief around her neck.

Alice Wambugu, a 27-year-old HIV-positive woman with close cropped hair and hoop earrings, said she counsels young women to practice "secondary virginity" -- to give up sex even if they have lost their virginity -- to protect themselves.

"I tell them how much they are at risk as well as give them my personal experience because it is really not smooth living with HIV," she said. "Secondary virginity is cool."

The youths came from a variety of private groups supported by U.S. government funding that use everything from skits to face-to-face counseling to try to prevent the spread of AIDS.

'SUGAR DADDIES'

Boniface Mwendwa, 24, said his group promotes abstinence and condom use and seeks to stop cross-generational sex to keep youths, usually girls, from being infected by older men.

"They are being exploited by the people we are calling 'sugar daddies'," Mwendwa said, saying the most vulnerable group in Kenya is 9- to 16-year-old girls.

The problem is monumental. According to Kenyan officials, AIDS has killed 1.5 million people in Kenya, about two million of the roughly 30 million population are infected with HIV and more than 200,000 Kenyans die from the disease each year.

"The problem you are working on ... goes beyond just a health problem ... it's a destroyer of societies, it's a destroyer of economies," Powell said.

Saying education, condom use and abstinence had helped slow infection rates elsewhere, Powell praised former South African President Nelson Mandela's acknowledgment Thursday that his only surviving son had died from AIDS.

"That kind of personal example and willingness to share the problem publicly is important so that people will say 'well, you know, if Mandela can talk about it, then I should talk about it and if he has it in his family, then maybe I have it in my family,"' Powell said.

News

Nature Medicine  11, 3 (2005) doi:10.1038/nm0105-3b   US AIDS chief altered report on nevirapine safety risks Emily Singer Boston Nevirapine cuts mother-to-child HIV transmission. AFP Photo/Anna Zieminski An AIDS drug used to block transmission between mothers and babies in Africa may be more dangerous than health officials knew. According to documents obtained by the Associated Press, the chief of the US National Institutes of Health (NIH) AIDS Division, Edmund Tramont, changed a report on the antiretroviral drug nevirapine to minimize safety concerns. The drug has been shown to decrease mother-to-baby HIV transmission by 50%, but can also promote drug-resistant forms of the virus, which can limit treatment options for the mothers at later times. It has also been linked to potentially fatal liver toxicity, as well as less serious side effects. In 2002, five years after the NIH began studying the drug in Uganda, several reviews of the trial pointed to flawed research practices and underreporting of side effects. The research was halted while the NIH and outside auditors reviewed the project. Tramont reinitiated the study 15 months later, after reportedly rewriting a report that said safety data collected from the trial may be inaccurate. The NIH supports the research, citing the many babies saved by the drug, but has also stopped recommending nevirapine as the first-choice treatment for prevention of mother-to-child transmission of the HIV if other options are available. An NIH review board has cleared Tramont of all scientific misconduct allegations. The US National Academy of Sciences is reviewing the issue and expects to release a report in March.

AIDS Study Showed U.S. Disregard for Rules

Tue Jan 4, 2005 03:41 PM ET

By Maggie Fox, Health and Science Correspondent

WASHINGTON (Reuters) - A study aimed at showing whether a single dose of an AIDS drug could prevent mothers from passing the virus to their newborns was so sloppily run that it should be disregarded, a fired oversight expert said on Tuesday.

Dr. Jonathan Fishbein, who is disputing his dismissal by the National Institutes of Health, says he is a whistle-blower being victimized because he shed light on careless practices by doctors testing drugs in Africa.

The NIH says his allegations are false and endanger the lives of babies because people will be afraid to use a valuable drug.

The trial of more than 1,000 mothers and newborns in Uganda was the main basis for using a single dose of the drug, Boehringer Ingelheim's nevirapine, to prevent mother-to-child transmission of the AIDS virus.

Nevirapine is also widely used in cocktails of HIV drugs that keep patients with the incurable infection healthy.

A committee of experts at the Institute of Medicine has been asked to determine if the trial was so flawed as to make the data useless, and thus force a reassessment of the practice of giving HIV-infected mothers a dose of the drug to protect their babies.

On Tuesday Fishbein told them that he did not trust any of the findings from the 1997 to 1999 trial, called HIVNET 012.

"HIVNET 012 is a study so poorly conducted that its data must be rendered invalid as a matter of law, policy and human health," Fishbein told the committee.

Under questioning, Fishbein said even laboratory tests done to show whether infants had become infected with the AIDS virus should be disregarded. "(Data) was generated, often by individuals that didn't have the training," he said.

Fishbein said investigators focused only on showing nevirapine works overlooked its often dangerous side-effects. "African life, it would appear, is not to be regarded as highly as American life," Fishbein said.

ALLEGING A COVER UP

Fishbein, hired to standardize policies and procedures, alleges that the NIH has covered up mistakes made during the trial and submitted incomplete paperwork to the Institute committee. He has hired a lawyer and a group called the National Whistle-blower Center to back him in his dispute.

His allegations have made headlines in South Africa, where the use of nevirapine was debated bitterly before being approved.

South Africa's ruling African National Congress has accused U.S. health officials of conspiring with German-owned Boehringer Ingelheim to hide adverse effects of nevirapine.

"Nevirapine is not the optimal solution, but it is working and there is no better help in very poor countries to prevent HIV-positive mothers passing the virus on to their children," a Boehringer spokesman said last month.

The AIDS virus killed 2.3 million people in Africa in 2004. Using drugs just before delivery can protect a baby, which otherwise has about a 25 percent chance of being infected at birth by an infected mother.

The National Institute of Allergy and Infectious Diseases, the NIH branch than oversees much AIDS research, denies Fishbein's allegations.

"Single-dose nevirapine is a safe and effective drug for preventing mother-to-infant transmission of HIV," it says in a statement on its Web site, http://www.niaid.nih.gov.

The NIAID said it had rechecked the HIVNET 012 data and found no evidence that serious adverse reactions related to nevirapine had gone unreported.

"The allegations of misconduct have been assessed by the NIH Office of the Director using standard NIH protocols for handling this type of allegation and have been found to have no merit," the NIAID added, noting that it will wait for the Institute of Medicine report on the matter, due in March.

India to Step Up AIDS Fight, Launch Media Campaign

Thu Jan 6, 2005 04:25 PM ET

NEW DELHI (Reuters) - India's prime minister vowed on Thursday to step up government efforts to fight HIV/AIDS as top media firms pledged to start a campaign against the disease in the country with the world's second-highest number of infections.

The deadly disease was not just a public health issue but a serious socioeconomic and development concern and could hurt growth if not checked, Prime Minister Manmohan Singh said.

"I assure you, our government is committed to substantially strengthening the national AIDS control efforts," Singh told a conference of media leaders.

India has more than 5.1 million HIV-infected people, second to South Africa.

Over the years, HIV/AIDS has moved beyond traditionally high-risk groups such as homosexuals, sex workers and drug users to the general population due to a lack of awareness.

To combat public ignorance and educate people in the world's largest democracy, 25 top media firms said they would devote time and space on TV channels and in publications to HIV/AIDS campaigns.

"We, therefore, resolve personally, as well as on behalf of our companies, to use our communications expertise and vast resources to do our part to change the course of this epidemic," the media leaders - top newspaper and magazine editors, heads of TV channels - pledged in a statement.

Thursday's conference was organized as part of a U.N. media initiative launched last year.

Hollywood actor Richard Gere, whose Heroes Project is associated with the campaign in India, said the commitment by Indian media firms was the biggest in the world.

"I think they are aware of ... how there is a window of opportunity right now if everyone gets serious you can escape what has happened so tragically in Africa," Gere told reporters.

The disease has reached epidemic proportions in Africa and has killed more than 20 million people across the continent over the past two decades.

More than 25 million people, or 60 percent of the global total, are infected by the virus in sub-Saharan Africa.

ALMATY, 4 January (IRIN) - Raising HIV awareness is no easy task, particularly amongst Kazakhstan's largely closeted gay community. But in a campaign aimed at doing just that, one local NGO is looking towards the Internet to reach members of the MSM community (men who have sex with men).

Speaking over a line of enthusiastic patrons at Almaty's Sparticus bar, one of a handful of gay venues that have sprung up since the country gained its independence following the collapse of the Soviet Union in 1991, Galkin believes the idea's time has come.

"We want to be an independent regional source of information for the MSM community. Through a centralised, regional website, we can reach more people."

According to health experts in the country, HIV/AIDS prevalence amongst the MSM group is low, but the risk of that changing cannot be underestimated.

Officially, some 4,600 HIV/AIDS cases are registered in the oil-rich nation, though many predict the real number to be closer to 20,000.

Dr Alexander Kossukhin, national programme officer for the UNAIDS office in Almaty, told IRIN that although the main mode of transmission was intravenous drug usage, he remained concerned over a gradual shift towards sexual transmission.

Dr Issidora Yerassilova, general director of the Kazakh Republican AIDS centre in Almaty, agreed. "Sexual transmission accounts for 20 percent of all infections," she told IRIN, noting however that in some parts of the country sexual transmission accounted for 35 percent of all infections.

Only 0.04 percent of all registered HIV cases were from MSM, Yerassilova said, conceding at the same time the real numbers may never be known.

"This group is just closed, given the taboo nature of homosexuality in Kazakhstan," the senior health official explained.

And while according to Galkin, only four members of the MSM community had been infected since 1999, keeping those numbers low was now his priority.

Working with a team of 12 volunteers, Alliance endeavours to boost the level of awareness amongst the MSM community by warning people about the modes of transmission and the risks involved, while at the same time distributing leaflets and condoms.

"We have received very positive feedback from the community," Galkin said, noting however that reaching everyone has proven a challenge. "Some people remain very much closed and are not open to receiving information."

It is precisely that attitude, coupled with traditional values and the stigma of homosexuality prevalent throughout much of Central Asia, that makes the yet to be funded website so promising.

Many small towns in Kazakhstan, the seventh largest country in the world, offer little to no information pertinent to the MSM community, while access to information in other Central Asian states looks equally bleak or worse.

NGOs working in other Kazakh cities have expressed an interest collaborating with Alliance, while NGOs and other groups working in neighbouring countries, including Tajikistan and Kyrgyzstan, are also keen to participate.

Homosexuality remains largely prohibited by law in Uzbekistan and Turkmenistan, although Kazakhstan, Tajikistan and Kyrgyzstan overturned the draconian Soviet laws prohibiting sex between men in 1998.

Still, many problems for this largely ignored risk group remain.

"On paper, the law has been cancelled in Kazakhstan and Kyrgyzstan, but society is not yet ready to accept it," Galkin was quick to mention, emphasising the great difficulties they had in establishing their NGO in 2002, and a general lack of financial resources in operating.

Meanwhile, patrons back at the now raucous Sparticus club see the website as the start of something promising. "The level of awareness will be much higher - allowing more people in Kazakhstan and beyond a greater knowledge of exactly what the risks are," 23-year old Max Badilova told IRIN.

"People think the disease is really far away and will never affect them - when really the opposite is true," Andrew Zhussupov told IRIN, noting though there were many sources of information, none was specifically dedicated to the MSM community.

Not all people lived in urban areas and could go to clubs - this was a way to help them, the 31-year-old explained. "Not everyone understands the problems. The website would be one step in the right direction," he said.